Friday, April 24, 2009

Small Wonders

Today I got an IM from my fiance that my son Jake who has been diagnosed as "nonverbal" said "more daddy" clear as a bell. He apparently wanted my fiance to replay the credits of the movie "The Incredibles". For some reason he loves the credits.

This may seem like no big deal to some but for Jake this is huge! When Jake was 18months he had an appointment with a pediatric developmental neurologist who after examining Jake sat down with his father and me and actually she actually said, "I'm sorry for your loss. This will be a grieving process for you as you come to understand the loss of a "normal" child and you accept that your child will be profoundly mentally retarded and live in an almost vegetative state and require life-long care!"

I looked at the doctor and said as my son was tearing up her waiting room and running all about, 'Thanks for your opinion but it appears my son is very much alive and having been told that his older brother was not going to survive to be born and then would never speak and is now a 10 yr old who loves sports, has no medical issues and will never shut up, I will have to take your opinion as just that."

I left her office thinking that I will grieve for the fact that people will view my son this way but I will never be sad when I look at this child and I will never give up believing that there is something beneath the surface in my son that cannot be examined." There are sparks of genius seen in my son when he can problem solve to meet his needs. When he sneaks quietly up the hallway looking to see if he will be caught stealing a snack from the kitchen by attempting to sneak the peanut butter, the knife and the bread out in multiple trips and hides them in his room, I know, there is much more going on beneath the surface. Just because it is hidden does not mean it does not exist. Just because someone is silent does not mean they cannot be heard.

So today when he speaks even briefly as clear as a bell I want to shout as loud as I can.... "shove it up your *** medical science! Grieve this! My baby has something to say and knows exactly what he wants!"


  1. Hi!
    Credits of movies--too funny! Kyle stays to watch the credits at movie theaters. It used to drive Chelsey nuts that we would be standing there as the rest of the audience filed out.

  2. Hey there, it sounds like we're practically neighbors :-) I live in Cambridge, MA and have a little boy with FX. I just found you and would like to add you to my blog roll if that's OK.

    I am no longer surprised when academically brilliant people make astoundingly STUPID comments. Surely I've experienced (and will experience) grief at times but people on the outside often just have no concept of the fact that with the grief comes GREAT joy.


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